Bingo

MARIE: We went to a rather brilliant event earlier this week on non-motor symptoms (NMS) of PD. First, a scientist specialized in brain chemistry talked about how Parkinson’s affects the brain and how that in turn affects all sorts of different physical systems, and afterwards a neurologist specializing in PD explained how practicing neurologists treat the various NMS.

Jon and I have read quite a lot about PD so there wasn’t a great deal that was brand new to us, but there were lots of interesting details and ideas. One striking point is that NMS are often overlooked during neurological appointments, and that neurologists generally believe their patients are much less affected by these symptoms than the patients themselves think. Another point, which was also made at the Glasgow conference last year, is that NMS tend to affect the quality of life more than the motor symptoms do.

At the end of the afternoon, we got to take home a booklet on NMS, originally prepared by the European PD Association (which you can download for free). Good stuff in there too, but also one point that raised an eyebrow or two with us: that “new research shows that up to 90% of people with Parkinson’s have at least one non-motor symptom, and about 10% have up to five non-motor symptoms”. Either that is a case of serious under-reporting, or Jon has been spectacularly unlucky, because he certainly has more than five NMS.

From the list of about 30 recognised NMS of PD, he has (and is being actively treated for) neurogenic pain, apathy, REM sleep disorder with vivid dreams, and erectile dysfunction. In addition, he has several symptoms that are not currently being treated with prescription drugs: anosmia (reduced sense of smell), pins and needles in the legs, and a tendency towards constipation – plus Jon is concerned about signs of dysphagia (trouble swallowing) and I am concerned about his difficulties with concentration and attention.

So that’s seven definite NMS and possibly two more on the way for Jon – or, as he would say, he’s won the symptoms bingo by a mile. Or has he? We’ve met very few Parkies who sleep normally, and not many whose sense of smell is unaffected. Likewise, when you take the trouble to ask people directly about specific symptoms rather than just asking how they are in general, you often hear about poor digestion and mood issues. So I reckon Jon’s a bit unlucky with his many NMS, but not that unusual.

It’s only in the last decade or so that neurologists have started to take NMS seriously. My sister, who worked as a nurse on a neurology ward some 10 or 15 years ago, still remembers the important meeting when the neurologists called together all the staff to reveal their great new discovery that Parkies also have NMS. The nurses, of course, were thoroughly underwhelmed by this revelation as they had known about NMS for ever simply from spending time with their patients. It’s good to know that neurologists are now finally getting on board, but it will still be up to each Parky and each carer to stay informed, bring up any troublesome NMS, and insist that they are treated just as seriously as the motor symptoms.